Posts Tagged ‘Gluten-free diet’

End of the Line

November 19, 2011

About a year ago last September I saw an ad in the newspaper for a study for people with Rheumatoid Arthritis – that would be me.  I saw the study doc and he decided I fit into it, so I began with their capsules made from hops.  After a bit he decided he wanted me to go on their medical food – it is 2 scoops of a powder in 8 ozs. of water whizzed in a blender with fruit.  I started adding some liquid Vit D and liquid Calcium to it as well as a bit of yogurt.  It was my breakfast every morning and it made it easy because I always knew what I was going to have/  There were several flavors – they were okay, not repulsive but not something I would recommend.  Then I was to do a second shake in mid afternoon, mostly just the powder and water.  Later, just before my birthday he decided to check to see if I had any gluten problem – the test showed I was gluten sensitive.  So I started on a gluten free diet along with the capsules and powder.

Another part was to write a pain diary every day – no real instructions so I had to wing it.  I used a spiral bound notebook that was 8 x 51/2, it’s a handy size and comfortable to write things in.  I decided to find some clip art figures, side, front and back views; it was only a few months ago I realized my computer could flip the side view so I then had left and right sides.  I used double sided tape, then later a glue stick to  paste each figure down.  Since the figures were fairly nude, I was able to draw on the place that was hurting – often it was the same thing many days in a row.  Now what I wrote wasn’t technical or scientific, it was simply what I felt, what I was doing and what was happening.  I made comments and sometimes my frustrations were quite obvious in the terms I used.  The first time I showed it to him, he was a little surprised – not sure what he was expecting.  I continued to write – there was one period of time early this year when I wasn’t able to write at all because of the pain and problems with my neck and shoulder.  By the time I was finished, I had 2 complete notebooks filled and bulging from the pasted figures.  When I gave them to him on my last visit, he was quite surprised.  Whether it has scientific value is questionable, but it may be entertaining for him to read.

There was no one else on the study who had had it for 40 years as I have, there were different lengths and probably gave him a good selection to study.    I would go to see him every 4 to 6 weeks after I was established on the capsules and powder.  One frustrating thing was the set of questions to answer every time I went in – my answers really didn’t ft the questions.  If I were doing it from a patient point of view, it would look a lot different – but no one asked my opinion, probably just as well.  They said it would take about 15 minutes to fill then out – took me half an hour.  I had to go to the research center early so I could do the forms before seeing the doc – that last few times they gave them to me to fill out before I came the next time.  Still a pain to fill out but I didn’t have to go so early.

He would occasionally do blood tests and at one point decided I needed fish oil.  So I was given a bottle of their fish oil to take every day.  One day I mentioned I was having a hard time finding something gluten free when I was out somewhere, I didn’t really want a big lunch, just something to help the hungries.    So he gave me some gluten free bars I can carry n my purse that fill me up while I am out and I don’t get a headache because I didn’t have anything to eat.  Often I would leave the center with one or two large bags of products that must have cost at least $250.  All I had to pay for was my gas and the toll on the bridge.  I don’t know how much the whole thing cost, I’m just glad it wasn’t on my nickel.

I’m sure he found me a bit  frustrating at times – the week after I started the study I fell and really hurt my knee.  Later I had some difficulty with the coated product and I think there was something else.  So my study wasn’t all that smooth.  I did lose 13 pounds but then gained back 2 – not bad, I would rather lose than gain.  For a while I wasn’t having hot flashes any more, when I went off the powder and capsules, I now have them again but rather mild.  There was no dramatic change, but I am moving a whole lot better than I was a year ago.  He decided to have me go off everything and see what kind of a difference there was – not much of anything.  So last Friday was my last visit for this particular project.   He did say he would contact me if something else came up that he thinks I would be a candidate for, so maybe it isn’t a complete washout after all.

I will miss seeing all of them at the center, everyone was friendly and fun to be with – though Dr. Bob took a while to loosen up and relax a bit.  So it is all over, it was kind of fun, interesting and if in any way I was of help for the study, that is great.  I am glad I did and look forward to seeing what happens in the future.

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Who’s Voice?

February 23, 2011

It hasn’t been a stellar week for me in terms of comfort physically, but it brought some interesting insights that hit home.  I had been doing well last weekend and was thinking “Maybe there is something to this gluten-free stuff after all”.  Then Monday hit and I felt as if I had been run over by a Mack truck.  I could barely move and I was so muzzy and tired it took  time and coffee before I began to feel human around noon.  I have no idea what happened, unless it was that cough medicine I took for this persistent cough – I need to go see the acupuncturist who cleared up the last one.  I have always used that one and it has really helped the cough – what was different?

As the week went on, I began to feel better each day – another round of withdrawal from gluten?  Then came Thursday night, I was cold all night and Friday I couldn’t get warm all day, my hands were cold and my head was quite warm.  It was also the day I felt discouraged with all of this and then something I had read a few days earlier suddenly hit me.  It was an  “I know that I know” moment.  I have been very aware of ego and all her negativity – she definitely was in control that day.  But then I remembered someone writing about “Ego Voice” and Inner Voice” and I began think about that and it seemed to fall into place.  I was listening to ego voice and all her negative nonsense trying to keep me in fear and frustration.  What I wanted to hear was Inner Voice with her loving, positive and empowering words and feelings.  I realized if all I hear is ego voice, it is better not to think at all.  I have listened to ego voice all my life since I didn’t know there was a difference, but now that I know there is Inner Voice, I choose her.  Listening to ego all this time has landed me here with all this going on – suppose I only listen to Inner Voice and see what results I create.  I can’t say I only listen to Inner Voice now – ego voice had free reign last night when I couldn’t get to sleep and I was feeling tired and cranky.  Though I did switch thoughts to something else and that did help.

However, I woke up this morning cranky and not feeling my shining self, so I asked Spirit for an attitude overhaul – an attitude adjustment wasn’t quite enough to overcome this morning’s cranky.  I am doing better now, that was only about 45 minutes ago but there was a shift and I know this works.  I remember in 1974 we moved to Los Angeles and rented an apartment in a brand new complex – it was quite nice but for some reason I didn’t like it there.  So I said to Spirit  “I don’t like it here, would you change my attitude?”.  Awhile later I realized my attitude had changed and I was fine.  So I have used this over the years and it works – it’s better if I forget all about it after I ask because I have a tendency to keep checking to see if has happened.  It is much better to forget it and then realize later on the change has been made.

This weekend I have been feeling better and more comfortable, I will be interested to see what Monday brings.  I have an early dentist appointment and then a Roadshow with some suppliers – once again bringing home catalogs and samples that right now are overrunning the office and the basement.  The Roadshow means walking and standing, so I know I will be tired when I finish, a nap may be in order when I get home.  I would like to be walking comfortably tomorrow so I can talk to the suppliers I most want to see, then decide how much more I can do.

Usually when I do a post, I have a lot to say – this one has about come to the end and yet I feel it needs a conclusion.  I haven’t a clue what it needs to be, but I will definitely check in to let you know my progress with listening to Inner Voice more.  How is it for you?

UPDATE

It is now 4 weeks later and the mean cough is on the way out.  I did see my acupuncturist and have had three treatments plus the chinese herbs every day.  I am not so drag my ass tired and I am beginning to feel more myself.  I also have been getting daily emails from  Julia Rodgers Hamrick of Easy World.  She has changed it from just a quote to Love Letters From Spirit – Wow, that makes such a difference!  I am now more able to allow Inner Voice in and listen to her, to be comfortable hearing the positive about myself and understanding that small things are triumphs.  I am proud of myself for keeping to gluten free for 6 weeks, it has been easier than I thought.  I found myself feeling depressed last week when I was working on taxes and found I have not earned much of anything.  I suddenly felt a failure and started to beat myself up.  Then I changed course – where did that come from? – and began to think about what this promotional products business has brought me.  Ike Pono, wonderful friends and relationships, helping people grow their  businesses, quite an education in the promotional industry, starting to know I am creative, building confidence and self assurance and also, having fun.  I have gained so much from doing it, maybe the next step is making enough money to break even and then slowly increase it every year.  Thank You Spirit for helping me turn around a very negative and upsetting experience.

Update

February 13, 2011

I have no idea what to title this post, not even sure where it is going – kinda like the past 2 weeks.  I usually write on Sundays but lately I have had a harder time than usual.  I had a cold in December and of course the usual cough arrived with it.  However, it wouldn’t leave and so it has been hanging on and on.  Now I have to take responsibility for not doing something sooner, I kept thinking it would go away by itself.  Well, guess what?  It didn’t this time and I have been coughing so much my chest hurts.  I went to see my acupuncturist almost 3 weeks ago for treatment and she also gave me Chinese herbs to take.  Cindy is Chinese and has studied acupuncture in China with some masters, so she really knows her stuff.  Se  got rid of a cough about 3 years ago – I hadn’t waited so long to see her that time.  I hardly feel the needles and I am not a fan of being on the business end of a needle.  She also wanted me to drink hot water to flush it out of my system and avoid sugar, so I have been drinking tea for the three weeks until I think I am floating and have  had a little sugar.  The first treatment she put the needles in places I have had before, but last week for the second treatment, she went to some other spots I hadn’t had before.  This fascinates me and I want to ask her questions – trouble is, when I talk, I start coughing.  Now, for  a motor mouth like me, not talking is very difficult; but I want to be well and if drinking hot walking and keeping my mouth shut is what is needed, I will do my utmost to comply.  I am going again Tuesday afternoon, I’m curious to see where she places the needles next.

I chose to go see Cindy rather than my regular doc because I didn’t want to get into the possibility of antibiotics and drugs, I take too many as it is and I prefer to do more natural and non-pharmaceutical treatments.  I am doing better, though I have not been very good at not talking or limiting how much I talk.  It is taking time and one thing she told me last week, this cough is depleting the nutrients in my body and I am not replenishing them.  She has a multivitamin she recommends because it has whole food foundation.  It isn’t cheap but I am willing to give it a go and see what happens because I don’t like feeling so tired and dragged out all the time.  Instead of short periods of energy and enthusiasm, I want longer and longer ones so I can feel human again.  It feels so good to be energetic and things are easier to do – I want to be that way all the time.  I am also hoping this gluten free diet will help too, though there are times when I wonder what is happening.  I have 2 or 3 good days,then a couple of days like the last two when I felt so tired, stiff and sore.  I wonder if there is still some withdrawal going on; after all, that 64 years of accumulated stuff to flush out.  Next Tuesday will be 6 weeks, will that be the turning point?

So what have I learned the past 2 weeks?  First, don’t wait so long to take care of illness or condition because it is much harder and more uncomfortable the longer I wait.  Second, sleep does a body good.   I noticed that last weekend.  I had two long naps on Saturday and sunday, slept for a bit on Tuesday and also on Friday, wished I had yesterday.  I was feeling too tired to sleep and that first nap Saturday afternoon last weekend seemed to break whatever was making it hard for me to sleep and I am doing a lot better.  I am sleeping a lot better at night now, what a difference from the months of not sleeping because my legs hurt all night.  Third, I am finding it is not very hard to eat gluten free, plus I don’t really miss bread and sweets much.  I have to thank all those other gluten intolerant people who came before and created food they could eat – now it is much easier to find gluten free in places.  There were a couple of times this week I could eat the food at an event or having coffee at Barnes & Noble – though they do have a packet of Dr. Lucy’s gluten free cookies.  I will admit to a small fear – if I decide “Oh well, this once won’t hurt if I eat normally”, I am concerned I will keep doing it rather than be as gluten free as I can be.  It is usually that first bite that worries me.  The old “Bet you can’t eat just one potato chip” quote.  Fourth, when I hurt and am feeling miserable, I remember Eckhart Tolle’s  question “There is nothing you can do about the fact at this moment this is what you feel.  Now, instead of wanting this moment to be different from the way it is, which adds more pain to the pain that is already there, is it possible for you to completely accept this is what you feel right now?”.  Sometimes it is very hard to not want it to be different, but I have had times when I have used this and it actually works.  I realize it is ego mind that is ranting and raving about the pain and all the stuff that is happening, she certainly doesn’t want to have me be willing to look at this way.  She wants all the power and pain and whingeing are part of it.  There have been other times when it has not really worked and I realize ego is more in charge than I realize.  Not a happy thought.

I’m sure there are other things I have learned, I just thought of asking that question as I was writing and I usually let things simmer on the back burner for awhile before things make sense.  I still haven’t thought of a title, the only one that comes to mind is update.  As I have written this, I keep wondering, “Am I whingeing and I promised I wouldn’t?”.  I could have chronicled all my pains and crappy days, but no one with a chronic illness needs to hear that because they have stories of their own.  It is a time of ups and downs and pretty much how things are for anyone with a chronic illness.  I just prefer the ups but I know I learn from the downs and appreciate the ups because of them..


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